Huntington’s
Disease (HD) is a progressive illness of the central nervous system. It
typically begins in those aged 40-50, leads to high levels of disability and
frequently has a major impact on behaviour and cognition. These features
suggest that HD has substantial economic consequences for (i) health and social
care services, (ii) family members who will often have to provide care, (iii)
society in the form of productivity losses, and (iv) patients themselves in
terms of lost income. Of course, the non-economic implications are also
substantial.

Assessing
the economic impact of HD is important for a number of reasons. First, there
are competing demands for health and social care services and, therefore, it is
helpful to measure the demands placed on these by any particular condition.
Second, there is a need to provide
high quality economic data that can be used in future evaluations of treatments
for HD. Third, establishing the economic cost of HD would serve to highlight
its impact, and this could then act as an impetus for policy makers and
research funders to give the condition greater attention. However, there have
been very few attempts to assess the economic cost of HD, and those that have
been performed are more than twenty years old (Tyler et al, 1982; Hayden et al,
1980).

Aims

The
aims of this proposed study are:

To
produce a questionnaire to assess the economic impact of HD.

To
measure service use of a representative sample of people with HD in the UK.

To
calculate the cost of services.

To
estimate the indirect costs of HD caused by lost employment and reduced
productivity.